Living with Acute Lymphoblastic Leukemia

Relapse

Another 3 months since my last post, that seems to be my schedule for the time being. I always noticed that other bloggers tended to fall off the face of the earth when they get released or begin a less intense phase of treatment. In my case I just didn’t see the use in ruminating about my treatment when I had the opportunity to focus on something else entirely. Once I started it became difficult to sit down and start writing again.

I suppose the most significant thing that’s happened since I wrote last was my relapse. About a week after my post on 8/10 I drove myself to the hospital in so much pain I screamed loudly enough to frighten other drivers in traffic. It turns out there were cancerous white blood cells bursting from the vertebrae in my lower back. When I finally got to the emergency room there were 3 people ahead of me and I was told i’d have to wait. Pouring sweat and trembling from the pain – I made quite a scene. I’m not sure how other people handle a situation like that. You must be out of your mind to want to work in an ER.

I was in the hospital for a month after that for another round of induction chemotherapy to try and knock the recurrent cancer into remission. It turns out it was actually not the same cancer I already beat but a new mutation. I guess that’s common with ALL.

Induction was just about as unpleasant as I remember. When I ended up back in the ER it was soul crushing. Everything had been going so well and almost over night everything came crashing to a halt and I was back to square one. Even though I’d had an incredibly short experience in treatment compared to what many people have to endure but I’d really expected the transplant to work. It was a low point which I am still finding my way back up from.

As with my first round of treatment, I responded very well to the chemotherapy and went back into remission relatively quickly. (as is detectable in my blood anyway, everything short of a marrow biopsy) Sometime during treatment for my relapse I began losing feeling in my fingers on both hands and experienced a very curious tingling down each of my arms. An MRI showed a slipped disc in my spine which was impinging on a bundle of nerves that was causing the loss of sensation in my extremities. On a whim the attending on service had decided to also get a shot of my brain while I was in the machine – while no one was really expecting anything the image showed several visible nodules on my brain which my doctor figured was residual cancer cells. Besides the image I thankfully never experienced any neurological symptoms.

Since then I’ve continued to remain in remission and in 3 days will begin the last stage of chemotherapy meant to treat to the nodules in my brain. I had a followup MRI two weeks ago which showed the nodules have disappeared completely – good in that there gone but a little disturbing because we were never sure of what it was or why it happened in the first place.

Once this last round is done and i’ve had a few weeks to recover my doctor wants to do a DLI or Donor Lymphocyte Infusion – a transfer of white blood cells from my donor (my little brother) to me to try and give my transplanted immune system a big boost to fight the cancer still in my bones. Since the transplant wasn’t able to prevent my relapse before, this is essentially my last chance to salvage all the work put into the transplant all those months. And one of my last real chances at a cure.

While a relapse was obviously always a real concern, id spent so much time focused on treatment and doing everything right that I never even had a chance to start healing and having a life again before i ended up back at the very bottom and quarantined in the hospital. I’ve been in a pretty dark place ever since. If that went so poorly, why would I have any faith in an even less proven treatment?

Even though I haven’t been as present as I would like on this blog over the last few months I have gotten some very supportive comments and emails from students, techs, nurses, doctors, patients, family members and friends – Thank you all for your kind words.